nothing more, part two

***this post has been written while under the influent of several strong drugs and most of which was written while in the hospital, so I'm sure ongoing editorial changes will need to be made, I thank you in advance for your patience!***

M o m e n t u m has been on my mind ever since I ended my blog posting from Saturday.  If I look at the last several years of my life and life's events I can illustrate perfectly the endometriosis-induced loss of momentum. 

Picture this: My first "real"-ish job in my career field (geriatric counseling, health promotion and education and social work) I worked there from 2007 until 2011. I had some of the worst flares during these years and I didn't even have a diagnosis until Saint Patrick's Day 2010 via my first of 5 endometriosis-related surgeries! So not only was I missing work due to being unable to move much less being a functional, contributing person in the world- sometimes my flares would be so severe to the point that I would be so crippled with pain that I was barely able to get from my bed or the couch to the bathroom.  Occasionally I would spend days at a time on the couch or in bed- or even worse I've spent a few dozen nights where I've slept on the floor of the bathroom. I would be in so much pain that my body would work up a sweat and I would have significant sweating and a hot flash feeling, the coolness of the tile floor was my savior.

Ok, back to my topic, what my endometriosis has done to my work experience-- the above paragraph that feels a bit ADD- so welcome to my mind lol. 

My work was understanding as long as the 200+ clients I had were cared for, and the requirements of our grants within the site I worked in were fulfilled. At this time I was working full time as Resident Services Coordinator, a few nights a week I coached little kid soccer, I was going to graduate school full-time (working my my graduate degree in gerontology), and even had a part-time job on the weekends where I worked as the marketing assistant in a large assisted living facility. This hyper level of activity in combination with my 'real' job as well as my precarious health, I believe it affected my health in a significant way.  My endometriosis truly began a major campaign to take over my life: unfortunately it was quite successful- it not only increased in the amount of time that I was ill versus feeling good, but it also majorly, in kind of insane way became way more severe in its presentation.  This is when my Emergency Room trips began. The pain was out of control and past what I could use at home.  It took a lot of me to go to the hospital.  It was good for super short relief of symptoms and maybe a good pain management plan. 

Early morning June 25th 2010 unfortunately I fell and broke my left ankle in a serious way that resulted in nearly 4 months off work and TWO surgeries; my surgeon told my parents and myself that my life would never be the same after that injury- he was correct! My application for time off from work for my surgeries and recovery period was approved. When I was 9 days away from returning to work I received a letter from my employer saying that they were no longer able to hold my position open for me so I lost my job. I was absolutely shocked and stood at the mailbox with tears streaming down my sad cheeks for several minutes as I read the letter over and over. I took the letter straight inside to my dad. He was the logical, calm and collected. Just his energy could help calm a situation when things get chaotic or overwhelming.  If I had to get my job I would rather it be caused by an incompetence or some type of mistake on my part- I'd rather have my termination related to something I have control over, something I could work on, if given the opportunity. Endometriosis had not only stolen my social life, any dreams of a romantic relationship, but my relationships with my friends even were impacted, further it impacted my relationship with myself in the most negative of ways. But now it impacted my career, the very beginning of my career, my springboard into the work I would soon be ready for after finessing m graduate work. Once this happened endometriosis had truly taken over each and every part of my life. At this time I began feeling anger about my disease for the first time. I had felt a great variety previously related to endometriosis such as: confusion, sadness, frustration, grief, shame, guilt, hopeless. . .  But not anger.

                               ...and then it happened A G A I N!!

A few years later. . .: June 2014 I was working full time at a local Senior Center in the Supportive Services department.  I enjoyed my work; however the endometriosis monster frequently got in the way and I would be late due to not sleeping at all and needing a few hours in the morning to give my body at least a little rest; leaving early because my lunch, or lack thereof, would send me through an endometriosis-related nausea cycle; or worst yet I would miss a day entirely, frequently a few days in a row as rarely is a flare only unbearable on one day. My supervisor was understanding (in the beginning); well as understanding as they can be considering they're trying to run a business and provide services to a vulnerable population whose needs could be of life or death importance, not exactly a business that can afford to employ someone with an irregular attendance pattern. Tensions started building and it became a very uncomfortable environment, and I'm sure the discomfort was not only felt on my side of things.  Even though I believe my supervisor and administrators knew my disease is legitimate and I was really ill; however, I had to take several months off last summer to have major excision of endometriosis and lysis of adhesions surgery. When I returned work the environment was becoming more and more uncomfortable with each passing day, it felt as though I was being punished for the time I had requested off, which they had APPROVED, but nonetheless when I returned things had changed.  I felt like a failure, as if I were letting everyone in my department (as well as my clients) down with my absences, as I am sure I was-- I was also letting myself down. But I also could recognize the symptoms and things that hinted that that I needed to stay home- which generally resulted in days being spent on the couch, generally covered in heating pads, and fueled into the fetal position cuddling with my boy Tink the Bengal kitty crying and praying for this flare to end.  I had one coworker in particular (whom I'm still great friends with today) who did nothing but offer support and would even come to my house and help me out if I needed anything but because of how hard I worked to get my education and to buildup my skill set that is necessary in my job it was very hard for me to not be able to do my best- and to see that in myself was a truly gut-wrenching experience.

I was contacted about a new job that was available in Ventura. I thought this might be the perfect opportunity to start over, in a new area, and to truly begin my career, in a new area, where not everyone knew about my disease and seemingly chronic state of unhealth. The job in Ventura was offered to me. I definitely accepted, seeing it as a great opportunity to start over.  So although I left the Senior Center on my terms and was not let go, my time felt limited there- it was time.  Shortly after I started my new job I began experiencing severe symptoms.  I couldn't believe it; it had barely been 6 months since my excision surgery- I couldn't believe that sooooo soon after that surgery that I could be experiencing such pain. I felt incredibly disappointed in that my surgery ended up not being the healing miracle I so needed and truly believed it would be. Another let down. Another stumbling block in my path. Another interruption in the momentum that had just begun in my 'new' life and job.  It was devastating.  Initially with the arrival of my symptoms I tried to hide it for as long as I could.  When my very pregnant appearing belly returned though it was time to come clean about what I was going through.  And, as it has with each other relapse, my attendance was greatly impacted due to the severity of my symptoms  Fast forward a few months and I was referred to UCLA and that surgeon suggested an oopherectomy and lysis of endometriosis and adhesions; this surgery would result in a month off work. I was approved for the time off and actually time-wise that is where I am currently; I return to work at the very end of June. In regards to my surgery recovery though it is slow going, I am feeling much better and saw my surgeon this afternoon and he is very happy with how things look.  No matter how well it goes with my return to work it still has resulted in a lost of momentum.  We shall see how the recovery of that goes as the return to work begins to unfold.

On a different note, I'd like to share a little about why I blog about my endometriosis experience. Some people tell me they think it is too personal of a problem to share, I obviously do not feel that way at all.  So I thought I would share why I started this blog and why I am so determined to share my experience.  I saw this quote this morning and it most definitely explains perfectly one of the reasons I blog:

Part of the healing process is sharing with other people who care.

         -- Jerry Cantrell

People frequently ask about my blogging about something so personal.  I don't see my blog about my experience regarding endometriosis anymore personal then blogs families have about babies and to keep people abreast of how their family is growing and what the kids are doing.  I think  the reason people ask that question is partially driven by societal discomfort around women's health, especially women's reproductive health and such. That is one of the reasons it has taken so long to "find a cure" for endometriosis. This disease is kept too silent and it is that silent that will continue to claim the lives of countless young woman who will continue to suffer greatly, mainly in silence acting as if everything is ok.  The graphic here gives the stats of estimated women with endo and is another big reason as to why I blog. I think it is an absolute disgrace that 176 million women are suffering so in every aspect of their life with this disease and the only proposed so-called 'treatments' are either surgical, possibly involving organ removal which  ultimately affects a women's ability to have they own children; or there are some medicinal options but those are harsh also, one I tried with two different bouts was called Lupron, which is a chemotherapy drug which is used to treat prostate cancer! It is a horrible medication and honestly I think it needs to be no longer allowed to be used for endometriosis; there are too many lifelong and life-altering side effects to make this drug even close to being worthwhile in treating endometriosis.

I have been so incredibly bored while spending this whole last week in the hospital. And so I decided to take part in my favorite passive activity for when I'm bedridden due to pain, and that is PHOTO EDITING on my phone! Here are some of my favorite shots.

                                                                                                                    

   

I would like to end this post with a prayer for healing, recovery and strength from the incredible Louise Hay, this is taken from her book, You Can Heal Your Life, a healing blessing this 'ohmism' that I created with a quote from Joan of Arc, it is the attitude that I have had to try to adapt as much as possible as the fight of my life versus endomtriosis.  I love the feeling of this quote and I feel like visually it matches the strength as well as the zest and passion for life:

You Can Heal Your Life

In the infinity of life where I am,

all is perfect, whole and complete.

I am one with the Power that created me.

I am totally open and receptive to the abundant 

flow of prosperity that the Universe offers.

All my needs and desires are met before I even ask,

I am Divinely guided and protected,

and I make choices that are beneficial for me.

I rejoice in others' successes, knowing there is 

plenty for us all.

I am constantly increasing my conscious 

awareness of abundance, and this reflects in a 

constantly increasing income.

My good comes from everywhere and everyone.

All is well in my world.

-- Louise L. Hay

Bless this day with healing, bless it with

radiant sun energy, fill each cell of the body,
bringing a flood of healthy energy to all the body,
banishing illness & disease, as healing grows.

May the abundant powers of health flourish within,
each day, may they expand & grow stronger,
bringing the gifts of vitality, strength & wellbeing,
Blessings flow now with ample energy & happiness.

Signing off with love-filled wishes for health and respect for 
all of my readers and friends, 

Stephanie